Loving Lucas - The Journey of Our Little Man with Down Syndrome

Hey Guys, Just providing an update for those interested. :) I appreciate you coming here to get updates so I don't have to repeat a story. Lucas was sick last Monday (12/30) see last post.  I gave him a very small dose of antibiotics once a day for 5 days. I would say he did really well up until Sunday night. We expected that if he was going to get bad symptoms they would have happened by Thursday.  So all that being said I suspect what he is experiencing now is something new. Sunday night I noticed he wasn't drinking his bottle, I thought there was something wrong with the flow, maybe the nipple but then I realized he might not be able to breathe out his nose. I suctioned him really well and with a saline rinse and then he ate more normally. I've had to suction him more often before I feed him since Sunday. And that brings us to last night (or very early this morning,  2:30am to be exact). I woke up with him and he seemed to be snorkely so I suctioned him really well rig...

Hey Guys, for all you checking in on this update, thanks for your prayers. At 1am Lucas woke up crying and we were able to soothe him but he was breathing abnormally fast. After several minutes of him not settling down and the heavy breathing staying elevated we decided to take him into the ER at Seattle Children's. He continued to sound pretty stuffed up and sound snorkely ("strider" is the medical term) He was breathing at least twice as hard as he normally does especially in the car and had a significant strider so we were glad we brought him in. Luckily Fernando's family (parents and brother) are staying with us over the holiday so we could just had to the hospital without waking the girls.  It is only fitting that as I was checking him into the (luckily) empty ER @ approx 2:15am, his breathing and strider calmed down and hes breathing more normally. As I write this they got him into a room in the ER, they suctioned out his nose really well, and took a...

Dear Family and Friends, I have a couple months to make up for, I didn't post when Lucas turned 7 months old. Here are his 7th and 8 month old photos together. Our October is busy with Natalie kicking off the month turning 5 on October 10th, then Fernando turning 50 on October 23rd and now I'm writing you on my birthday! Lucas continues to grow and I just recently had a check in with his heart and his VSD (hole in the lower part of his heart) is all but closed and, long story short, that means that he will have his heart surgery between 2-3 years old rather than in the next 6 months! So that's good! If only because the surgery has a higher chance of being successful the bigger he is when he has the surgery. Lucas as a 7 month old is solidly rolling over, he's sitting in his bumbo seat a lot which give him support until he can sit up on his own and he's eating with us during meals getting some pureed foods. He enjoys eating. Lucas at 8 months old is beginning to almo...

 Dear Family & Friends, Thank you so much for your prayers and messages. Lucas didn't get worse overnight and the doctors let me know that they think he's actually over the worst of the virus he has and is safe to recover at home. I am so relieved! It's so hard to not imagine the worst, and am still trying to relax after getting home. Lucas is in really good spirits despite his coughing.  We've had a slew of appointments this last month and added on a couple of diagnosis with little Lucas. Audiology - mild hearing loss in his left ear (which may get better as he gets older). They said it most likely has to do with his ear anatomy that is likely retaining fluid which impairs hearing. Nutrition (Feeding) Specialist - he had a swallow study done a couple weeks ago. He is aspirating slightly when he eats, which is the smallest amount of liquid getting into his lungs. So the solution is to thicken his food. Interesting for sure, but it works! This, however, is disappoint...

Dear Family and Friends, Lucas is 6 months old as of last Friday! Our little man is getting so big! He's just barely holding up his head now. Hasn't quite rolled over yet, but working on it. I was hoping to send out a lovely note just updating his progress, but as it happens I am writing this from the hospital as Lucas was admitted a few hours ago. This story begins last Friday on his 6-month-i-versary. He happened to have his 6 month check up with his doctor that day as well which means getting updated vaccinations and we also opted to get him a Flu shot to equip him for the upcoming season. That meant 3 shots in his adorable thighs, poor little guy. Like most things he tolerated it like a champ. Only cried a little bit, then took a bottle, and promptly fell asleep. That night he started to feel a bit warm. They get the same vaccinations at 6 months that they do at 4 months and he got a slight fever for the evening after his 4 month vaccinations so I expected a fever. The next...

Dear Family & Friends, Our little Lucas is a whole 5 months old! We hope you all have been enjoying your summer. We've had some small trips to the hospital, but for the most part Lucas has been very healthy. He may have some minor inflammation in his lungs from aspirating while eating which is a common ailment with DS. It's become more obvious since he got the feeding tube out last month, so I've been mostly feeding him by bottle. I'm anxious for the next feeing appointment because if it continues to be an issue, then he'll have to have the tube re-inserted. So, for now, I'll say I'm enjoying the break. At 5 months Lucas has found his thumbs and hands and is delightfully entertained by sucking on his hands several times a day. His neck continues to get stronger. I keep having in mind that the girls were sitting up by 6 months old and I don't know that he'll be there by 6 months, but he was also born about a month early so we can give him a break....